Being Heart Healthy

Last week Vada had a scheduled cardiologist appointment. Everything checked out well. She still has her small VSD and the leaking valve but is showing no signs and is having no symptoms of struggling from her heart conditions in any way. In fact, her cardiologist, Dr. Bramlett said she is "Amazing!" and he went on to say how impressed he is with her constant growth and successes. His amazement isnt because of her having Down syndrome, he has a lot of patients with Ds, he is amazed because of the obstacles that she has overcome and yet she is thriving and strong and she is constantly reaching her goals and moving on to meet new ones!

 I like this doctor a lot. He's very nice and he is so great to Vada but there is a time shortly after Vada's heart surgery where he kind of put me in my place and set me straight with God again and he has no clue about it...

It was during a check up, maybe a month or two after her heart surgery. Dr. Bramlett mentioned that Vada still had the VSD and the leaky Valve in her heart. I was floored, angry and shocked. I didn't understand why the actual heart surgeon hadn't filled me in on this huge piece of information directly after the surgery and I why I was just finding out about it all at that moment, weeks after the actual surgery. Most of all, out of all that I was feeling, I was terrified for my little girl and out of that fear I spit out a question asking why the surgeon hadn't "fixed" her heart when he was "in there" in there first place. Dr. Bramlett turned to me, looked me in the eyes and calmly stated that the surgeon wasn't God and wasn't capable of "fixing" everything or everyone. His statement stung but he was right and I knew it. Dr. Bramlett's reply has stuck with in many situations. I think a lot of patients or parents of patients may have been angered by his matter-of-fact reply but it was just what I needed. 

Yes, God creates all things perfectly in His image. Sometimes however, we want to "fix" or help when something isn't quite as right as we would like them to be, like for us with Vada's heart condition or when she was suffering with seizures. However, ultimately, it's still all out of my control as well as the doctors. Ultimately, God is the best medical Specialist available and He is the chief of surgery. He'll make the final call and I have faith in Him and in Vada, they are both so strong, stronger than I will ever know. 

Now, that I have rambled on and your all probably wondering what the heck I am trying to say... All is well. Really. Vada's check up went well. She is doing great and while she still has heart conditions that are of concern, they are not changing or getting worse or causing her any problems, so we are as happy with this check up as we possibly could be, (short of being told her heart had miraculously healed).

P.S. Check out how much Vada has grown since September of 2011!

Watch Them Smile: For Ryan

I'm sure that most of you have heard of Ryan Roberts. 

 Ryan is a beautiful 21 month-young baby boy who happens to have a magical extra chromosome and who also happens to have some pretty severe and complicated heart issues which has left him fighting for his life. Unfortunately, doctors are telling Ryan's parents that they are unable to do anything more to help Ryan's condition. He is a heart warrior and in my book he is also a heart hero!

Ryan's story pulls at my heart strings for so many reasons and that's why I felt so strongly about joining in on the banana split craze. 

When you care about someone and you watch them go through something as difficult as this, you want to do something-- anything to help! You just want to make the persons pain fade even if only for a moment. I have never met Ryan and I don't know his parents personally but what I do know is that there is a special place in my heart for him, because of the stories that his family have shared. 

That's why today I contacted some of my friends. I gave them little to no notice and invited them to meet my family at Whitey's Ice Cream for banana splits, in honor of Ryan and his family.

Tonight we smiled and laughed and played, we ate banana splits and tonight they were much more than just a desert...

 Tonight we celebrated Ryan. 

P.S. Diane, we love you too!

Recovering: A Quick Update

Vada is still kicking butt and taking names but (and it's a small but) there have been a couple of very minor set backs. Her chest XRay this morning showed some fluid in her right lung, her urine output has decreased and she has gained a decent amount of weight. She came in weighing 17lbs-3oz and now weighs 19lbs-8oz. Many things can be the cause of the different issues, varying in different degrees. Over all, we think that it has to do with the anesthesia and the pain medications that were used during and after her surgery. These things tend to shut down or "quiet" the bowls and cause a backup of fluids. She was started on Lasix again and after not seeing any wet diapers she was changed to a stronger diuretic. Since that medication was introduced (earlier this afternoon) we have seen two very full diapers and have heard a lot of gas being passed.

Another concern is her oxygen intake. Vada has always sat in the low ninety's. Always. However, she is dipping in the high eighties, especially when she is sleeping or nursing. So, she was placed back onto oxygen. She is on the lowest amount that they can give so the concern is very minimal. Right now, she is asleep, her little nose piece is out of her nose and pointing towards her eyes. Her intake is sitting at 88%. The nurse doesn't seem concerned but I am going to fix her nose piece just to make it worth the tape stuck onto her sweet sensitive skin.

Yesterday, Vada was taken off of all pain medications and boy did she have a hard time later in the evening. Poor baby cashew. Last night, when she was clearly in pain she was placed back onto one of the stronger pain medication that she had already been on. She was given it again at five this morning and then at noon. Since then she has only had Tylenol and she is doing very well. It was so sad though, watching her be in such an extreme amount of pain.

Vada was awake when Daddy and Grandma were here but getting ready to leave and that was around 8:30 PM. She just recently fell asleep. So if you use your imagination you'll be able to figure out where I am about to go. The talk around the nurses station and in room 429 was that Friday may have been Vada's release date. Truthfully, as much as I want to bring her home, I was not comfortable with leaving on Friday. With Vada's new road bumps, Friday is off the plate. Which I am okay with! She needs time to heal and recover and I felt like she was being rushed. She's just a baby. Anyway, were being told that Saturday may be where it's at, but I am going to place my bet on at least Monday. Still, that's only six days post-op and we were told seven to ten days, so shes still ahead of schedule.

To a Friend

Right now someone that I know is about to give birth.

She will be having a baby girl whom she has already given a name to. She knows that her daughter has heart issues and she knows that there is a possibility that her daughter may have down syndrome as well.

My heart is aching remembering my own experiences.

I have been checking in on my friend in almost a stalking manner over the past few hours. I have never met this women but she holds a special place in my heart. Her daughter who is not yet born also has a place there as well.

When I was told that Vada did in fact have Trisomy21 my whole world crumbled. I felt defeated in every way. That was when I was around twenty weeks pregnant and the rest of the pregnancy was the biggest emotional tornado that I have ever experienced. While I am glad that I knew prior to her birth I still wouldn't wish those feelings onto anyone.

I have learned since Vada's birth that having a child who has Down syndrome is not really the hard part. The hard part is dealing with other people and their ignorance's towards Down syndrome. The pain comes from the comments, suggestions, looks and conversations of people who don't know what they are talking about and worse, don't understand the effects of their words.There have been many occasions where I have wrapped Vada in my arms as if guarding her from this ignorance. Its lonely and painful sometimes but its not because she has Down syndrome or because she has caused the pain. Its from society and the way that perfectionism and beauty is portrayed.

Having a child with Down syndrome was not then end of my world it was the beginning of a new and beautiful one. Vada was a gift like any child but with a difference that not everyone can be blessed with. I pray that someday the world will see her as the same and not different in any way.
Now, as I anxiously await for the mention of a new birth I wanted to say just a few things to my friend...

I pray that today when you look into your daughters eyes, regardless of what her diagnosis' may or may not be, that you see God's perfection. If she happens to have Down syndrome, please don't ever let society make it so you don't enjoy her. She will be amazing because she is yours. She will live up to her potential and she will make you proud. She will teach you things you never knew was important and she will bring you joy that you never knew existed. She will change the world, even if it only yours. She will be everything you ever hoped for and more. Today, when you meet her tell her that you love and then tell her again.